Breastfeeding Miriam – my story
Eight years ago, my second daughter Miriam was diagnosed with a unilateral cleft lip and palate during a routine morphological scan. The cleft diagnosis was a cold shower on my dream of having an uncomplicated breastfeeding experience this time around as I had struggled with many feeding issues with my first child – luckily, this had inspired me to become a breastfeeding peer counselor and I was halfway through my La Leche League Leader* application process at the time Miriam’s cleft was diagnosed. Although I did not know how a cleft would affect breastfeeding, I did at least know where to begin searching for information.
Once over the initial shock I turned to the lactation books I had on my bookshelf – I was devastated, however, to read that it might not be possible to breastfeed directly until after surgical repair of the cleft. At that time, I was immersed in my training and fully believed in the LLL philosophy of “mothering through breastfeeding”. How was I going to ‘mother’ or parent if I couldn’t breastfeed?
The rest of the pregnancy was spent planning. I read anything I could find on feeding a baby with an oral cleft and made decisions about feeding tools, pumps and storage containers. My partner and I visited various hospitals, comparing the surgical techniques and protocols of different cleft surgeons across the country. Eventually we settled on a cleft team based in Pisa, Tuscany, based on their breastfeeding friendly protocols and timing of palate repair.
With all that planning and organising, I was relieved when I finally began to feel the preparatory contractions and knew that the anxiety of waiting would soon be over. The evening I went into labour, I set up my rental pump and scales and drew up a chart for logging expressed milk volumes, amount fed, and weight gain.
Miriam arrived after a short and intense labour. She latched briefly without really sucking. One of the midwives suggested that I express colostrum into her mouth – I tried but did not really know how and did not manage to express anything. I did not know then about collecting colostrum in late pregnancy; that it may have increased my supply, would have taught me the valuable technique of hand-expression, and could have provided a back-up supply for supplementation. I also did not know then that hand expression is more effective than an electric pump in the first two days post-partum. Nor did I know that with a firm position and a good hand expression technique I could have compensated for her cleft and fed her directly at the breast.
Those first days, I expressed with a single attachment, resting the funnel inside a large syringe. At the beginning, I could only express a few drops, increasing to 1 or 2 ml per feed until my milk ‘came in’ on day 3 and I logged 70ml at one session. Despite that volume, I struggled to pump often enough. Initially I only scraped by with 3 or 4 sessions, as it was hard to manage lengthy feeds, a pumping schedule, a 5-year-old, and a new baby.
In those months, I would spend a great part of each day pumping, labelling, storing, washing, bottle feeding – over and over again – along with the bare minimum of housework that we did to keep the house running. At night, my partner would feed Miriam while I expressed. We were both sleep deprived. Initially, I expressed my milk 8-10 times per 24 hours. I was not a great parent in that period – I did what I could. My five-year-old was tandem nursing which helped us connect despite my having little time to dedicate to her, and her nursing may have helped my expressed milk output to reach the average 900ml of expressed milk per day that I would eventually reach.
Miriam settled into a schedule and was a good sleeper – I would literally deposit her in the pram that she slept in during the day, as soon as she dozed off to the sleep at the end of a feed so I could get other things done. I was so tired, and she was such a good sleeper, that one night I was tempted to wheel her into her own room sure that she would sleep through until morning despite the fact that she was so small and I was co-sleeping and nursing her older sister. I really wanted to sleep, but I felt we were slipping into a mutual detachment so I kept her near.
Things gradually got better. By two months my production settled and I managed to start storing a small back-up ‘stash’ of milk in the freezer – some weeks I got away with pumping five to six times, but often I had to go back up to eight session again as my production went down. Seeing the litres of milk logged on my chart and the bottles of milk lined up in the fridge, did give me a sense of achievement at a time when I felt little encouragement and support.
I desperately wanted to breastfeed directly instead of expressing and bottle feeding, so somehow I managed to fit in a daily attempt at latching. The routine was to walk Nora to preschool, come home and set up a tray with a supplementary nursing system and an empty bottle, and then settle into bed with Miriam. She would take some milk from the supplementer at the breast, then I would tip the remaining milk into the bottle and finish the feed that way before rushing back to preschool again. When she became more able, I would nurse Miriam at night when we were the only two awake, while the bottle warmed, and nursed her to sleep after bottle feeds. The first time I nursed her in public was memorable – nobody noticed but I was beaming inside.
In her third month, I began to decrease my pumping sessions and output as Miriam was taking in milk at the breast. In her fourth month, I dropped pumping sessions and considered not using the pump at all. Without expressing though, she was not get enough milk and started losing weight. I did not know then the techniques I could have used to help her get more milk at the breast, and it was hard to manage our nursing and expressing routine – there just weren’t enough hours in the day – so I settled on bottle feeding and expressing by day and nursing at night and stopped most of my night time expression.
Miriam had two surgeries in her first six and a half months – her lip and alveolo (gum line) were repaired at 2 ½ months and her palate at 6 1/2 months. The second surgery was the long-awaited event that I hoped would allow her to nurse autonomously. The first days after palate repair were hard – during palate closure, the palatal muscles are severed, repositioned and sutured which makes swallowing painful. Miriam did not want to drink anything and would not be comforted at my breast. Once we returned home, she was hungry and drank her bottle of milk in a few short minutes (with her newly acquired suction), but refused to nurse – she was on a full-blown nursing strike. At night, I would rock Miriam to sleep against my bare chest, and slip her onto my nipple as she dozed off – but as soon as her lips closed on my skin, she would rear back screaming.
As a last attempt, I decided to camouflage my nipple with a nipple shield (as it was a similar material to her bottle teat) – she accepted that, but only for a few seconds. I then tried the supplementary system threaded underneath the nipple shield so that she would receive milk immediately in those first few seconds. I would tape the tubing on first, and then tape the nipple shield on top – it felt clumsy, but at that point, I felt that this was our last attempt and would have been happy for even just one more feed at the breast even with all of that equipment. Wearing the supplementer, I squeezed milk into the shield, offered Miriam the breast and…it worked! She did not rear back; she just latched on, nursed until she had finished the milk in the supplementer and continued nursing. I sat there in amazement. Weaning from the shield was spontaneous – the tape would get soggy, the shield would slip off, and eventually I just latched her on without the shield while switching sides. I was so relieved, Miriam was finally nursing autonomously, at seven months old, and I could return the rental pump and scales.
Writing this eight years later, I realise that breastfeeding Miriam would teach me to parent another way, not through breastfeeding but despite the time that breastfeeding, those first seven months, would take away from both children. I saw my parenting goals shattered, but I picked them up and moved on. This taught me empathy towards other parents – I realised that there are times when we cannot achieve what we want for our children, so we do what we can and that is our gift to our children.
Breastfeeding Miriam was a difficult experience, harder I believe than it should have been. I do not feel comfortable encouraging other parents to breastfeed their cleft affected infants without also trying to make it easier for them. Cleft families need specialised feeding support, psychological support, support from our cleft team and paediatrician or family doctor, peer support from other cleft parents, and support from family and friends. This is one example where it really does take a village to not only raise a child, but also to feed the child.
*I resigned from La Leche League Italy in January, 2014 and now dedicate my time to working as an independent lactation educator and breastfeeding counselor, while studying towards a Bachelor of Science and the IBCLC® exam.
I offer phone/Skype counselling: I can help you devise a feeding plan, talk through your feeding concerns, help you find in-person support near you, and help you navigate your way through the information that you have received from your health providers and other sources – contact me for an appointment.